832 Person Colitis Question and Answer Survey

Below are all the questions and responses listed as a percent (%) from the 832 people who took part in the survey.

MAKE SURE to check out the pictures that about 60 people sent in below as well…just to make sure you know what some photo taking colitis people look like:)

AND, a special thanks to my own Gastro doctor (Dr. Neil Stollman) who was super cool to once again take part in a iHaveUC project and share his own answers. You can see his answers along with his comments (when he added them) next to his picture below each question from the survey.

Is salad bad for someone with colitis?

45% – No

29% – Yes

26% – Not Sure

Not Sure: “different patients with colitis have different dietary sensitivities; there’s certainly no worry that salad (or Chinese food, or dried fruit etc) is ‘harmful’ to their disease process, and won’t cause a flare, but many people have worse symptoms, and the simplest and most accurate ‘answer’, in my opinion, is that there’s really NO obligate dietary restrictions in colitis, but patients need to be mindful of how their body reacts to salad (Chinese, dried fruit etc) and if a certain kind / type of food reliably causes increased symptoms, then of course avoid, but if not, go for it!”

Not Sure: “most do, based on fact that most will relapse (eventually, although there are rare exceptions) and many meds, particularly 5-ASA / mesalamine, has good evidence that it lowers frequency and severity of relapse.”

Not Sure: “not in the most strict sense, like opiates, where the body craves and has withdrawal, but patients frequently get to really like their steroids, because they feel more ‘up’ and energetic and of course, if can improve their colitis, all of which is highly positively reinforcing, so then yes, they ‘want’ their steroids. Its their docs job to help them understand the long-term negative trade-offs that accompany this short term benefit, and plan accordingly.”

Below are the pictures that were submitted by some of the participants of the survey.(Thanks to everyone who upload your photos, we’ve got some super cool looking folks here with UC!)

pretty funny!!

Ho Ho HO!!

**If you have any comments you’d like to add regarding any of the questions above, please feel free to do so in the comment section below**

Thank youto ALL of the participants who participated in the Q&A Survey. There was not only a record number of participants, but also a record number of countries represented in the answers below. (45 countries, pretty incredible, viva Puerto Rico!!, Puerto Rico es un pais?)

United States

United Kingdom

Canada

Australia

Ireland

South Africa

India

New Zealand

Puerto Rico

Iran, Islamic Republic of

Sweden

Japan

Portugal

Italy

Ghana

Philippines

Pakistan

Peru

Norway

Cayman Islands

Latvia

Poland

Russia

Turkey

Trinidad and Tobago

Slovakia

Slovenia

Korea, Republic of

Saudi Arabia

Saint Vincent and the Grenadines

Estonia

Germany

Denmark

Czech Republic

Colombia

Belgium

Bahamas

Spain

Ethiopia

Israel

Iceland

Indonesia

Hong Kong

Fiji

Kenya

There will be more surveys to come in the future, and everyone who has joined the free newsletter will most definitely get notifications when they take place.

Thank you again for your participation, like so much of this website and life in general, there are no right or wrong answers. My hopes and goals with this survey was to allow everyone to gain a better idea of what a large groups feels/thinks about some basic colitis related questions that common UC’ers have. All of these questions have been asked from people and family members living with UC.

Lastly, if you are part of the newsletter group and want to see more of these types of surveys in the future, please let me know below in the comment section. This particular type of colitis survey is much easier for me to manage on a large scale with hundreds of participants compared to the surveys in the past where everyone is able to write personalized comments. That said, if you would much rather have the ability to leave your own comments for each question, that’s fine too, just let me know.

48 Responses to 832 Person Colitis Question and Answer Survey

Thanks so much for your feedback. The reality is that there’s not always going to be a “correct’ answer for questions about our disease. Just like there’s no 1 treatment that works for everyone. One of the main goals of the survey was to allow people like you and I with UC, to see what a large group of our peers felt about certain questions.

That said, I will for sure try to do a better job of providing some info(or links) to stories that bring up the different topics mentioned next to questions in the future.

For example, there’s plenty of stories about “pregnancy” and “prednisone” and even stories about UC’ers in the military, and people in India with UC on the site, which could probably paint some color to some of the questions.

Great survey Adam! I agree with the results. One question I would have liked to have seen. Do you think UC is being studied enough by the medical community? I’ll bet that would have been 99% – NO!
Keep up the god work and know we all appreciate what you do!
Good health!
Don

I think you’re right regarding the study stuff, but, on the bright side, its come a long way as well. Of course the more the merrier. Glad you be appreciating and enjoying this stuff, and thanks bigtime for being a part of el siteo.
hasta la,
adam

Judging from the diversity of respondents, it seems that UC doesn’t discriminate with regard to sex or ethnic background, and isn’t limited to any one part of the world. Just imagine how many people worldwide have UC. Makes you realize you’re not alone in this.

Great survey. I love doing your surveys because sometimes questions come up that I never would have thought of !
Its great to see so many countries represented….but im not surprised Adam your site is amazing.

It is indeed super cool to see the world take control of getting active with regards to UC.

One thing to remember is that this website may be cool and interesting or whatever you want to call it, but without participation from the thousands who use it each month, it would be worthless. And very BOOOOORING. So thank you to everyone who reads, writes, comments, and enjoys the site. -Adam:)

Adam ,
You have had such a positive effect on my life! I immediately open emails I see from this site. Just recently I found a friend was recently diagnosed and referred him to the site because you and my fellow UCer’s alway have great feedback with a touch of humor. This illness is diferent for everyone and diet is a huge factor. It’s as diverse as the people in the UC world!

My wedding is in less than a month and I am not letting UC take that from me. Even if I have to invest in some sequined wedding diapers!

I ment to say in my post that im the person from Dubin in Ireland who has emailed you a few times……and my son loves Michaela’s meat loaf !
Hope you remember me from this description.
Totally love your cook book it has helped me so much.
Had my surgery in April….but i will write another post about that.

Don’t know what I would have done without your site for the past 3 years.
Adam you’re the best.

We can also help ourselves by continuing to speak about this unfasionable disease and therefore raising awareness. Too many of us suffer in silence and unfortunately, bad things happen when good people do nothing…

Its hard to push the cause when we need energy for the daily fight but we will get there, good luck everyone, keep learning!

hey there G,
You’re more than a part you know…YOU ARE the Olive Oil King of the Planet no matter what the Italians think. Thanks for the kind words, and your message to others. Can’t agree with you more. have a great rest of Sunday,
-Adam

Your wish is my command, no seriously, quite a few people have commented just like you (and about 30 emails to my inbox) and instead of me answering, I’m actually going to be posting answers to all the questions from my own GI doctor who has agreed to participate with his own answers. As long as you are part of the newsletter you will get notified when the answers are posted to the site. Stay tuned (and thanks Doc! for hooking up the iHaveUC site once again)

I am pleased and satisfied with the survey and the answers given. I agree totally that our bodies have different responses to what we eat and drink in spite of the fact that we all have the UC disease. Thanks again Adam and be well.

Thanks for your doc’s responses. I would add in terms of dietary triggers I found keeping a food and BM diary really useful to identify and control triggers. I found salad in large amounts to be a trigger for me, possibly because salads are high in fibre. I have found that eating smaller salads is ok or only eating salads every few days.

I’ve been struggling with a flare for the last 3 months. Being ever so viligant on my diet. My one weakness is wine- I must admit. I’ve given up chocolate, coffee, sugar, wheat, processed carbs – I mean really. Wine is the last semblance of normality that I’m holding on to. Anyway, I absolutely loved the photos of other UCer’s. It makes me feel not so alone with this disease. You are also so beautiful, so worldly, and I feel connected to you in a way I can’t really describe but, it is humbling. Love to you all. May we all have better tomorrows.

I’ve had UC for about 2.5-3 years it got so bad I refused to eat , with a careful diet , asacol and vitamens my life seems to be back on track ! I can’t stress how much diet has to do with my UC , any sweets , fried food , pizza , bread , pop , wine are the num 1 killers for me ! Please get to know your body and even eating clean will take a while to feel better !! Pro biotics , digestive enzymes (veggie) glutamine , vitamen D ,and asacol 3 in the morning and 3 in the afternoon for about 6-8 months and cut down to 3 a day is keeping me in line ..
Good Luck to everyone and yes it’s possible to feel better !!

P.s keep a good diary This will really help you learn more about what foods are troublesome , but when having a flare all foods may be hard to digest ..

Hi Sheila,
I don’t think their is any final/fore sure answer. There are some doctors who say stopping can reduce the chance that a re-initiation of remicade working in the future(if in-fact it did work initially). I believe this is based on the immune systems response and immunity to outside agents, similar to that of antibiotics when nit taken”properly”. But I’m sure that there must be some colitis folks who have stopped and re-introduced remicade successssfuly as well. Anybody else with some thoughts here?

Very helpful and quite interesting. I was diagnosed Sept 1992 – have had two children, I have a FT career in a Pharmacetical Company and an active life. Get to know your body, be compliant with your meds, and don’t be afraid to ask your GI doc about new meds, changing your diet, etc. Thanks again Adam, stay well!

Thank you Adam this really help I have been taking remicade for 2 years now and it has done wonders for me I have been good on my colon for like a year but my mom want me stop taking it. And I feel like if I stop I’m going get sick again and then I can’t take it again but I will still take it

Hi (again) Rob,
I was just thinking about the relationship between eating disorders and UC, or any bowel disease really.
My weight has fluctuated SO much over the past 7 yrs….I’ve gained and lost 10 20 30 lbs in a flash, and I think that has led me to having a very f’d up body image, weird food obsessions, calorie counting, starving myself, guilt. It’s horrible. Before Uc I never thought much about my weight…
I wonder if other UCrs have had/are having similar experiences…
Thanks for bringing up the topic :)
R

Hey Richele thanks for your honesty. I believe it is quite common for some UVers to develop some type of eating disorders especially during a flare. From calorie counting, carb counting, amount of food intake, BMs and amount of solids passed how can one nit develop a disorder. Food becomes a love hate relationship and is constant on the mind.

I’m soo glad the link to this survey was sent to me. Thank you for doing this. I would like to get your newsletter.

I was diagnosed with UC in 2005. I want to say for the women wondering about getting pregnant with UC, go for it! I def recommend discussing with your doctors (both OB/GYN and Gastro) first so that everyone is on the same page; ie will have a game plan for if you should Hve a flare up during pregnancy. I have two beautiful little girls, Rubi Grace who just turned 2 and Izabella Noelle who is going to turn 1 in less than two weeks. Rubi was born 2 1/2 weeks eary ad Izzy was born 4 weeks early. However they were both great weights and perfect in every way! I have to admit I was a littl scared to get pregnant having UC but after talking with my Gastro about it, he put my mind at ease.
Everyone is different as well as symptoms and severity so I would definently talk with your doctors first but do not let UC stop you from having a family!!

Thank you again for this survey. I look forward to your newsletter. :-)

Recent Reviews

My Biography

Feeling Crappy to Feeling Happy eBooks

Jan 16, 2018byPrinolan Govender

City/country:: South Africa

I honestly felt like you wrote my biography. I've lived my life the same way you did, eating, drinking and partying without having to worry. I did have signs along the way as well but didn't take to much notice to it until the blood showed up. I was diagnosed in October 2016 and at the time my GI told me it had nothing to do with my diet, so I lived my life the same way I always did. I've been trying many different meds without little or no results. After my 29th birthday in June 2017 I started feeling more sick and the weight loss had started, I've always been a skinny guy and ever since I lost quiet a bit of weight which has been something that just makes me feel more uncomfortable. I consulted a Homeopath in October 2017 and she started me on the Paleo diet, while researching that I came across your site and the SCD diet which I started in December 2017. I didn't do any of the diets a 100%, but I did start seeing results. I went a bit off the rails during the festive season while traveling but I'm easing into the SCD diet again and plan on going 100% this weekend. UC has caused a lot of stress for me but I've come to accept it and look at it in a positive way. My goal is to eat healthy, put some weight back on and start living a normal life again. I haven't let UC stop me from living my life although it has limited me, but thats all going to change! Thank you for sharing your story and being an inspiration to all of us.

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Feeling lucky

Feeling Crappy to Feeling Happy eBooks

Dec 10, 2017byKathryn-Jane

City/country:: Vancouver Island, Canada

I found this to be a very funny, informative book. It made me realize how lucky I am, as well. I haven't suffered anything like the severity of symptoms Adam has experienced, for which I am grateful - but that's not to say I haven't known the usual UC misery at times! As a wordsmith and grammarian, though, I wish the book had been given a more thorough edit. Maybe in the next edition.

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Feeling crappy to happy

Feeling Crappy to Feeling Happy eBooks

Nov 21, 2017byLynn

City/country:: North Carolina

The book was so honest and forthcoming about UC symptoms. It was almost like reading my own story since this journey began for me 2 years ago (no remission yet). I was starting to feel pretty hopeless about this whole situation but Adam’s book gave me hope that I (we) can take control of UC. I have been following the SCD and eating what Adam ate while in a flare. I can tell a difference! Still sticking with my docs medical plan for now. But, I am hopeful that healing is coming and that diet is the key. Thank you Adam for continuing th share your journey!

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Thank you!

Feeling Crappy to Feeling Happy eBooks

Oct 06, 2017byJennifer

City/country:: Toronto, Canada

Thank you so much for writing your e-book. I'm glad I came across it. I learned a lot. I realized that I don't like my GI doctor and need to find another one. She hasn't helped me at all. As soon as I was diagnosed with a mild case of UC back in 2009 I knew that I had to visit my Naturopath. I was not interested in taking any medication. I was prescribed salofalk enemas and I tried a few but when you keep having to run to the bathroom it didn't make any sense to me. I was prescribed the pills as well. I sat down with my Naturopath and we went through the side affects. My symptoms were less than the side affects so I decided not to take it. It has been quite a journey and unlike Adam I knew it had a lot to do with food. I'm sorry you had to suffer so much Adam. I gave up pop and any carbonated drinks, deep fried foods and aspartame/splenda. This seemed to help. I now think I need to take things to the next level. I just came across FODMAP and what Adam suggests. I'm also looking into Keto or Paleo. My stress levels are less currently due to a less stressful job and I realized that has helped. I take supplements like probiotics, digestive enzymes, fish oil, etc. Thank you so much for sharing your story Adam. It makes me feel like I'm not alone in this.

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Bravo! We can all do it like Adam.

Feeling Crappy to Feeling Happy eBooks

Aug 29, 2017byBonnie

City/country:: Toronto/Canada

Thank you for what you have done for the UC community! No words can express my hope when I read your website.

The books are purchased for my 21-year-old son who has been diagnosed with ulcerative colitis 3 weeks ago. His case is mild to moderate and inflammation occurs on the whole colon. The GI doctor in Toronto here did not give us any hope of finding a cure.

Feeling Crappy to Feeling Happy is written in an intimate way to allow the readers to walk the brave journey with Adam.

After ready your book, it boosted our confidence of finding a cure through alternative means.

I have read through the recipes and circled the ones that are ok during active flare. There are not many of them. I am preparing meals based on the suggested recipes. I requested Adam to provide additional recipes if possible. He got back to me with a new website which has more recipes. It also has videos of the latest research studies on UC. https://www.nimbal.org/blog/recipes

Adam, thank you again for taking the time and effort to share your personal experience of conquering UC!

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Soooo thankful!

Feeling Crappy to Feeling Happy eBooks

Jul 29, 2017byDanyelle

City/country:: Sioux Falls, South Dakota

I read the book within a couple days and am so very thankful that I came across it! Adam's story helped me feel that I wasn't alone in this and being able to relate was comforting. I'd always been a healthy child growing up and so having this occur right at the beginning of this year has been a battle. Luckily for myself, it wasn't as bad as Adam's recovery. This book led me to the SCD and book "Breaking the Viscous Cycle" and diving into the reading and research I want and need to know. Along the way I also came across the book "Two Steps Forward, One Step Back". I plan on taking what I've learned and applying some diet/lifestyle changes to then become medication free!

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Not alone

Feeling Crappy to Feeling Happy eBooks

Jun 15, 2017byDeidre Dixon

City/country:: South Carolina/USA

I was only recently diagnosed with UC and had so many questions (and was so scared). This boy I was a godsend. Adam's sense of humor, directness about symptoms, suggestions, personal success with SCD and recipes gave me just what I needed to get my hope back. Highly recommended.

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4.75.0116116I honestly felt like you wrote my biography. I've lived my life the same way you did, eating, drinking and partying without having to worry. I did have signs along the way as well Feeling Crappy to Feeling Happy eBooks

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